Psoriatic arthritis

debram

Im a 49 year old woman and having suffered 3 bouts of euvitis and iritis and Psoriasis was finally diagnosed with psoriatic arthritis following a fall in which I hurt my shoulders, Ive been moaning for at least 3 years about tiredness and joint pain but as Im overweight my GP only every undertook basic blood tests like thyroid- being told all your bloods is clear I thought I was going mad- lost it- its all in the head then. When I fell over in October (I had been suffering severe pain in my shoulders since Aug)- I was referred to a consultant who discovered chronic bursitis and large spurs- he then referred me to a rhumatologist who ran ultrasounds and the most bloods i have had in my life- finally I was diagnosed. For years i was told there must be some inflammation in my body to be having iritis and psoriasis but no one bothered to run bloods or any other tests- even the guy treating my psoriasis never checked me out- I also had another classic sign or two- chronic fatigue and pitting in the nails- My husband thought I was a lazy cow when all I did was lie down when I got home from work,I had a job to get up in the morning and some days struggle to pull up my pants! I thought was working too many hours in my job. Now im in my third week on Methotrexate and can see slight improvement of my skin but I am in so much pain from my shoulders and feet. I have it in the digits of my toes and my right toes do a mean impression of the spock hand gesture- parting so far I could get another toe in between- the left toe is creeping up over my big toe and my little pinkie on my left hand is starting to curl over towards my palm. I am on the sick from work as I feel I cant go on struggling in and need some time to look after myself. I began Methotrexate so that it will help my skin (which I find embarrasing) and more importantly my aches pains and joint problems should slow down( im told). I am worried that when I go to my GP next week for a further sick note that he will say im fit to work.He told me the other week everything I have is treatable so I should be able to work in the future. Im seeing a theraprist because I cant stop crying and finding it hard to deal with my emotions and pain. When anyone asks how I am my husband tells me to stop moaning and sarcastically asks if they have a hour or two for me to tell them so I cant talk to him as hes obviously sick of hearing me moan.
I dont know anyone else with these conditions- is there anyone out there similar to me? How quickly does psoriatic arthritis go through your joints? I have pains in my wrists, elbows and hands too and Im terrified for the future.

skezier

Hi debram,

So sorry your feeling so down,. Its hard to accept and bit like being hit by a truck.

Work wise.... i think if your your GP does say that he might be wrong and perhaps you could see another one? Its not fair but this new system is unbalanced, unfair and useless..... well that how I see it

I also have PSA, we tend to abbreviate down to PA here cus we are lazy Mine is in the arms and the neck and might be in other places but I have a lot of oa also in the same joints so they no longer bother to look......

I wonder if your husband would read some of the leaflets from the site (under arthritis) to help him understand.... I really think there is a lot of bad understanding and he might find it helps to read the info from here? Some can be down loaded and more can be got from sending the helplines a pm with your address and asking them to send you a info pack.

I haven't got one but the helplines are good.

Glad the mtx is helping a bit though and like you I was embarrassed even though I only had a bit on the elbows and knees and the mtx has done that much anyway but not much more.

When you go to the gp we do half decent pocket duties... its sometimes helps to know your not on your own. I hope so much today will be a better day and maybe the mtx will start to do the bones as well? I think mine is doing too much so its not able to control the pa but there are other drugs as well so hang in there.

It might also be a good idea to call the AC helplines, number at the top of the page, as they are very good at understanding and sometimes we just need to talk.

Hope is so fragile with this bone shift so will lend you some if you need. Nice to meet you and it does get easier. A cyber ((( ))) and a buckets of hopes Cris x

dreamdaisy

Oooooh I had a GP just like yours! I began with my PsA in April 97, it began in my left knee which swelled, and swelled and swelled. My GP looked, and looked and looked and declared there was little wrong and it would sort itself out. I, stupidly, believed her. I also had what I now believe to be psoriasis on my scalp but she called it dermatitis. :roll: I was finally referred to orthopaedics by the physios at my local footy club, lost another year in being bounced between them and rheumatology and then things started to happen. The knee, by this time, was 27" in circumference and it was operated on in Feb 2002. I began sulphasalazine just before then and I've been on various drug combos since.

I think a change in GP may be in order. GPs are just that - GENERAL practitioners - but as in all professions you get some who are more on the ball than others. (My current one is excellent, I love her to bits.) I think yours could do with a refresher course in auto-immune arthritis, (PsA is one of those) and I would suggest that you ask the Helpline here for at least three copies of their very good leaflets, one for you and your husband, one for work and one for the GP.

I am so sorry this has happened to you but it's not that uncommon an experience - and this forum is worth its weight in gold as you ARE talking to the initiated on here. OK, so it's a club that not many of us would volunteer to join but we DO know what it is like, we DO understand the tiredness and pain, and we DO understand the pressures this puts on family life. This is a shock to you - it's probably also a shock to your husband and his 'grumbliness' may be attributed to a few things including the fact that men like to fix things and this is something that cannot be fixed. I know mine feels helpless at times. Right, I have to do my meds then ring my mum. I'll be back later and I hope you will be too. Things will get better girl, in time. I wish you well. DD

debram

Thanks for the replies- it does help to know Im not alone- I joined arthritis care through an engine search as I havent had any "aftercare" so to speak- and yes your right- it is a shock-i feel like Ive been hit by a truck. I will get some fact sheets ! I was a bit unfair to my hubby wasnt I? Hes a darling really and next week weve been married 30 years so Im amazed hes still with me to be honest! However he is fed up with me telling anyone who will listen because he is always with me and has heard to all before- Ill save my moans for my therapist! My hubby has also been searching online for info as hes a firm believer in alternative medicines and therapies- he tells me I must try the "stone age" diet now and leave off processed foods, bread, tea, coffeeetc etc ( good idea really as im also allergic to wheat and dairy)- I am trying but I will try harder with that too- I need to lose weight and that may help the pains! :roll:

dreamdaisy

I am so glad that you posted again, it was lovely to hear from you. This is not an easy time for you or your OH, we all understand that. Take care. DD

annalou

Hi Debram, I was diagnosed with PsA last month having suffered aches and pains since 2007. I, like you, have had three doses of Methotrexate and thankfully dont seem to have suffered any side effects, phew! I'm so glad this site is here as the advice is invaluable and it's just nice to know we are not alone. I don't post very often as I don't feel I've got too much to add as I'm a newbie to all of this but everyone is lovely and they all have a wealth of experience so we are in good hands

I still work, albeit parttime, and I have two young children, 2 and 4 years old so i intend to muddle on as long as possible, I really hope the medication can give me my feet back, this is my worst area, together with hands, wrists, elbows and lower back.

I just wanted to say hi and I hope you get some relief soon

debram

Read the fact sheets-thought they were really useful thanks! Also did some more googling online- dont like the pictures of Psoriatic Arthritis in toes and fingersthough and hope its a long time(if at all) mine look that bad!
Been to my GP- neednt have worried- I sat down sensibly this time- no crying and blubbering- I said I have spoken to my employer (did that on phone last week- he has been to visit too)who has told me not to worry about going back to work until I sort myself out. He said he would rather me take a couple months and get back when I am actually FIT TO WORK! He sid he doesnt want me to worry about work- Which I have been! Ive struggled to work for the last 3 years- having a few weeks here and there to rest then dragging myself in and I havent done myself, my staff or employer any favours. I told my GP this and he agreed. Now I can go to sleep at 2 pm every day if I want! Its like being a child again-NAPTIME!! I find by 2 pm I need a sleep. Im not sleeping well at all at the moment.
I went for bloods today and had to get a bus home- when I got on I only had a £20 note so the bus driver told me he couldnt take it and told me to get off the bus . I couldnt walk home as it was too far so I burst out crying then got myself together and got a taxi. That will teach me to get change next time! I just find that Im crying at the stupidest of things- I plan things to the minute at the moment and if Im thrown out of that routine I cant cope. Ok I didnt expect to be to be thrown off a bus so I guess that was extreme --so I wont beat myself up about crying about that!
Ive also been offered heat treatment for my Psoriasis as its quite deep and severe- has anyone had that alongside Methotrexate? If so what are the results like? are there any scars? I will have to have three treatments a week. Mind you what I thought was the worst thing that can happen to me wasnt the psoriasis its this bloody Psoriatic Arthritis-Am signing off now as my fingers ache! Thanks for replies XXXXXXXXXXX Deb

stickywicket

Hi Deb. I don’t have psoriasis. Mine’s RA but there are a lot of similarities.

I’m glad your boss has proved understanding. That will be a big weight off your mind.

As for the tears – stress, fatigue, frustration, fear for the future? Does that sound about right? This stuff must be always lurking in the back of your mind right now and just waiting for an opportunity to break out. The £20 note fiasco provided the opportunity.

Things will get better. Just keep taking those naps and talking to us.

phoenixoxo

Hi Deb,

I'm a fellow PsA sufferer, 22 years this November. I was 12 when I was first diagnosed, which sounds a bit traumatic, but the worst times were in my early twenties when the disease came out of remission and made life very difficult for a while. My GP at the time took ages to realise how serious things had become, so I struggled for months trying to keep up my job while taking maximum doses of OTC meds just to get through each day.

Reading your posts, I recognise the emotions I went through myself. I'm fortunate that I've only ever had one bout of psoriasis, when I was 5, but the arthritis has hit me pretty hard. No finger or toe deformities, though, so please don't let those images worry you. Just be kind to yourself, get as much rest as you need, and keep in touch. I hope the methotrexate works for you, likewise the heat treatment.

Best wishes,
Phoebe

lorraines

Hi Deb, so sorry you are having a bad time ,I also have PA and I take methotrexate and enbrel which keeps everything just about under control apart from my wrists but also keeps the psorisis at bay just few odd patches here and ther, I have not got the typical nail pitting of trouble with fingerjoints so not everyone gets the same symptoms.Since I was put on this medcine in 2007 it enables me to keep working, so hopefully when the medication gets in to your system life will become much easier. I wouldn't worry to much about talking about your illness I think that's how we come to terms with it ,when I look back I must have told anyone and his friend who would listen .
Well enjoy your naps while you can, things will get better.
Take care.
Lorraine

nanarose

Hi Deb, sorry to hear that you are so troubled, confused and having such a rough time - that is why this forum is the best. Real people who know exactly what you are going through and don't try fobbing you off with the usual 'get a grip' nonsense.

I too have PA, and wasn't diagnosed for years. All my pain was put down to age (a usual one if you are nearing 50) muscular problems, gout, fibromyalgia and a virus...according to the doctor at the time.

I was so stiff and in so much pain that I couldn't turn in bed, walk without a stick or get up out of a chair - I felt my life was a nightmare, and no one seemed to be listening to me.

Eventually I did, after badgering the doctor I had at that time quite a bit, get an appointment with a Rheumy. Even so, it was several months before I got the definitive diagnosis of PA, although I had dreadful psoriasis at the time.

Since then I have been on mtx, firstly tablets now injections, and I have to say that it has changed my life completely. I still have swelling on my fingers and toes, but my psoriasis has gone, and although I have had liver problems with the mtx, it has been a godsend to me. I can more or less have a normal lifestyle although at the moment my arthritis seems to be affecting my back now.

So what I'm really trying to say is that don't despair, things really will get better in time. The hardest thing is to accept that you have this condition for life, and you may have to change your lifestyle a bit, depending on how you react to the treatments.

It's really hard making people understand that although you may look healthy, but underneath that facade, you are hurting. I find I don't bother discussing my condition unless it's with my friends or family, who genuinely want to know, otherwise you get the 'But you don't look sick' line trotted out time after time, which becomes a bore.

As for heat treatment. Do you mean UVB light therapy in the hospital? I had this before I was diagnosed, and it did help my skin improve a lot, but it is time consuming and for me unfortunately, the results didn't last long enough.
However I have been told that I must be very careful in the sun due to the effects that mtx has in conjunction with sunlight, so I'm a bit surprised if this is what is being offered to you. Then again, I'm no expert, and everything you do, and take, will be monitored carefully.

Don't expect the worst, you may be one of the luckier ones and treatment will be really effective for you. No point in thinking the worst at this stage, be as positive in outlook as you can - I find it really helps or you can start to feel too sorry for yourself!

I wish you the very best of luck, and remember, this forum is full of kind and informative people who really know what they are talking about.......I'm not putting myself in that category though....I usually just lurk and read the posts! x

debram

Yes Ive been ofered UVB but they want to see how I respond to Methotrexate first. I am hopeful that the Methotrexate will help my psoriasis clear up so that I wont need it. I am also waiting to see if it helps my Bursitis- my orthapedic surgeon said that he will wait another 6 weeks and if not improved he will remove the spurs thats causing me so much pain in my shoulders. I have been feeling very sorry for myself havent I?, my therapist said its perfectly natural and I hope with her help I can get over the shock and start to be the confident bubbly person I was . I do have other medical problems which are not related to the PA, ,I wont go into it but its a bowel problem that has restricted my day to day activities. When I first joined this site I had just been diagnosed with PA and told an operation for my bowel isnt possible and I think that was the last straw for me. I have been looking for an answer to my aches and pains for 2 to 3 years but got an answer that I didnt expect ( it could be far worse I know). But I thought why me? and what else will go wrong? I think at that time I was so low I didnt know what to do. Ive been told that stress can be a trigger for both Iritis and Psoriasis and I have a very stressful job. Ive lain the blame at the door of work because Im contracted for 35 hrs but work at least 45 to 60 hours.(unpaid of course- thats dedication!) I realise 10 years on that its bound to take its toll- I have lived to work not work to live. I think my journey to ill health began when I lost my beloved mum in 2008. After that I developed psoriasis but at the time I didnt know what it was. In 2009 I have the first of 3 bouts of iritis and euvitis in close succession, then my husband had cancer and my psoriasis went berserk. Hes clear and all ok thank God but I believe that these events were my body telling me it couldnt cope. Now I need to get my brain to take over and find that positive mental attitude that kept me going for the last three years. Im making a start by seeking help because I dont think I can do this on my own. Ive only had one councelling session face to face and one on the phone but found it so helpful, Along with the info from this site- the forum and factsheets Ive read, I think Ill have all the tools to pick myslef up dust myself down stop feeling sorry for myself and move on. I do think the road will be rocky but Im working at it. I havent been out for weeks except to the doctors but this weeked were going away- my two lovely boys have paid for us to go away for the weekend to celebrate our 30th wedding anniversry!.We were married Easter sunday 1982! My husband and I have so much to be thankful for and whilst I cant drink on the Methotrexate Ill raise a glass of coke! XXXXXXXXXXXXXXXX Happy easter!

dreamdaisy

Diagnosis always comes as a shock. I remember feeling relieved at first that finally someone was listening to me about my fat knee, then I was cast into glood and doom by the fact that the first drug did nothing to help, nor did the operation. It can take some time to find the drug/s that help, so be prepared to be patient! I truly hope though that whatever you try does the trick for you.

Having had a berserk immune system from birth I never bothered asking why me, on reflection it is the logical development. I was expecting diabetes thanks to the long-term use of steroid inhalers but so far, so good on that front! There is no doubt that stress can exacerbate the skin: I am under some stress at the moment and I have patches of P all over the place, which is unusual for me. You have been dealing with a great deal of stress and pressure over the past few years so I hope that you can begin to relax, be kind to yourself, rest as much as you can and that you have a splendid Easter. We will be here when you get back - don't be afraid to talk to us as we DO understand what it is all like. I wish you well. DD

stickywicket

debram wrote:

I think Ill have all the tools to pick myslef up dust myself down stop feeling sorry for myself and move on.

I really hope you do, debram. You have had a lot to come to terms with and maybe, by trying to soldier on, you've not allowed yourself to really come to terms with it all until now. Take your time. Don't rush things. Remember we are always here for support and have a really, really good Easter.

skezier

Hi Deb,

Glad they are trying to help you and the only thing the MTX (methetrexate) has ever done for me is cleared the skin... mind I was lucky and didn't have the psoriasis too badly.

Its meant to do the bones as well and well I came off it for 3 weeks to see if it did help them and have to say (a begrudgingly) it does help with some of the swelling so don;t get put off it or worried and give it a go as it might really help you.

I do have the obvious pitting and odd shaped toes and to a lesser degree fingers but its not always the way it goes and well you hang in there and I hope today will be a decent one for you.

Glad all the leaflets helped and it is so like being hit by a truck but you will get your head round it. Cris x

debram

Thanx for replies- you are right stickywicket I have tried to soldier on and it hasnt done me any good because in my job you need to be 100% fit . I work in a customer facing role and manage a team of 10 people. You never know what will walk through the door and as well as having normal tasks you do every day you collect more as the day goes on- never enough hours in the day syndrome! Ive given all I have to work and because of that Ive left nothing for when I get home. I kept pushing and pushing myself- I am supposed to work 9 to 5 but because I was having trouble moving when I got up I used to get up at 530 to come round- then start my drive to work at 630 to miss traffic and start my day between 7 and 730- working at least 2 days a week until 7 at night and rarely out before 6pm, then start the drive home which with traffic could take a hour. By 2 pm I was shattered. 14 hours ot of the house and working 1 in 3 sats for 4 hours with no time back too!(never enough staff to cover Saturday opening) Its no wonder Im in a mess. Im now signed off work for 12 weeks and in that time I will have my methotrexate increased-(hope that will slow things down, help my psoriasis) possibly have my spurs operated on( sort atleast ome of the shoulder pain out) and I have got an appointment for a colonoscopy (yet again - thats 3 in 12 mths) My colorectal surgeon is worried theres inflammation in my small bowel-unrelated to Pa I think Im going to stop thinking about work and putting it first- Im putting me first! I hope when I go for review of methotrexate I can have some pain relief then- cant have it at moment as they dont want it to interfere with my methotrex-Signing off now-My little pinkie is throbbing again- I have to admit Im left wondering how I can do my job in the future- another huge part of my day is spent on the computer!

stickywicket

That sounds like a horrendous work schedule for a fully fit person, let alone someone with arthritis. You are signed off work for 12 weeks so I suggest you decide now when you are going to think about whether or how you continue and where to go next if you decide you can't. Set a date and then refuse to think about it before that date. Instead, use the time to relax and help those joints improve a bit. No point in having 12 weeks off then stressing out for the full 12 weeks.

I do hope the increased meth will help, the colonoscopy goes well, the results are good and you can then get some pain relief.

Meanwhile, I believe you have an Easter holiday to enjoy. Go for it :P

debram

Hope everyone is ok and had a nice Easter break. I had a nice anniversary break and went out with friends I hadnt seen for ages.But I spent the whole week trying to get out of going - I still hate crowds and feel vunerable when Im out. I hate superarkets too they stress me out. I went to meet my friend but asked to change the venue as they had wanted to meet in a busy pub. We had a nice meal- was asked to go out to pictures but I said I had to get back (sanctuary of home) I wasnt well on the journey back- I have incontenance and ibs and put it down to the food I ate. Its horrible and rules my life- I was told a couple of weeks ago that I cant have an op or it could make it worse so I have to be "carefull" - I cant make plans- thats why I found working so difficult- at least at home im near a toilet!
I have been warned that the Methotrexate may not agree with me but when you have IBS and faecial incontenance I thought its gonna be difficult to know if its the normal thing or Methotrx. I have however had an upset tummy twice and been sick 3 times in 7 days-I have watched what ive eaten too . I have Hiatus hernia and am supposed to take omeprozole but have left off all drugs (as advised) to ensure dont interfere with Methotrx. I did have such bad acid and felt sick one of the nights and took an omeprozole then I was sick within 30 mins. I guess I shouldnt have taken that tablet? But ive been sick twice since. I feel like whatever I eat doesnt agree with me- I go to see my consultant on monday regarding the Methotrxate so will discuss this with him. I will also ask to be referred again re my Pa as I feel its getting worse- As ive said before Ive had pains for aprox 2 - 3 yrs before I knew what it was but the pain at the side of my foot is constant and like toothache. I have had bad aches in my feet and terrible cramps which I now think is relate to PA- Does anyone have cramps too? I also had a burning sensation in my right hip at night which has become more frequent. My hands have daily pain but some days are better than others. I feel like I have to stretch out my fingers and wiggle them to get relief- is this a normal feeling? I may just have more heightened awareness now?Metho so far hasnt touched my Psoriasis so I hope when its increased I will then start to see a difference- roll on Moday.
Having also had euvitus and iritus with a bout of iritis just a month ago- my eyes burn and ache too- mostly towards the afternoon.
Exhaustion- well what can I say about that- I tried to change my spare bed the other day and whilst it was painsul due to my bursitis - I felt so exhausted after I had to lie on the sofa to rest. Things that I would do as part of my normal day I find a challenge. I feel lazy sat down but also when I do sit down and relax I feel so much better. I keep having mood swings- yesterday I was hyper for a few hours then crying and feeling down. :?

stickywicket

I'm glad you had a good anniversary break though the meal out was both good and bad.

Although I'm no doc, I'm surprised you were advised to give up the omeprazole while starting meth. I, and many others on here, take both and it was never suggested to me that I should stop the omep. I would also doubt that that was what made you sick. I think maybe the acid reflux was too far gone for the omep to stop it all happening. I hope the appt. will sort it out for you.

I'm not surprised at the mood swings - you have so much going on. I do hope someone can give you something to help with it all.

debram

Thanks for reply-It was my gp who suggested I do not take any medication and that includes painkillers- I have made an appointmentto see my Gp Thurs to discuss. I think you are right that I shouldnt have stopped it (and I need painkillers for the pain- in my shoulders from bursitis and my feet from PA ! Once Im back on my medication I will at least control some of the things thats happening x